Has anyone gone from compensated to decompensated?

[Brett11]

I can’t seem to find anything about it?

What made you decompensated?

Did you go back to compensated?

How many times has it happened?

Was each decompensated time worse than the last?

Cheers,

Brett

[Paulwil]

That is a good question. I was always decompensated right up to the transplant apperently I felt completely well and the only symptom I had was slight jaundice.

I have always wondered if there are degrees of being decompensated?

Best wishes

Paul

[Hidden]

Once mine changed to decompensated, there was no going back. It all went downhill from that point until the transplant 6 months later. Lost 7-8 kg of weight, mostly muscle, within a couple of weeks. Don't know what caused it to change but when I fell ill while on holiday, the sonographer who was performing the ultrasound questioned why I was going to the gym as according to him it puts too much stress on the already struggling liver. At the time I was training 4-5 times a week, had to get ready for the beach 😊. Maybe that had something to do with it although none of the consultants here ever said anything about strenuous exercise. But then noone said anything about not drinking when I was diagnosed with Hep B & D as well as cirrhosis later so take from that what you will.

[Millie09]

Very good question brett, i have been decompensated, then compensated since 2009, i often wonder the same as you.. what causes it ? .does it just happen even though all the 6 monthly checks show all.is ok ?.. just wished we knew..

[Brett11]

All my docs say that I can go decompensated again without warning. Hate living every day as being a day closer to being decompensated again. My glass is always half empty lol.

[Millie09 in reply to Brett11]

To be honest with you Brett, i think anyone with cirrhosis regardless of what stage they are in can change at any time.

Dont go worrying each day Brett, it may never happen.

I don't let it get to me. What will be will be ....🙂.

[Hidden in reply to Millie09]

I love your constant positivity Millie xx

[Millie09 in reply to Hidden]

aww .. thank you laura. , i dont see the point in wasting time. Just enjoy each day whatever your doing xxx bless you.

[Bermuda1]

Yep , been there some that , went from being given two years , to will make old bones without a transplant , as long as you look after yourself as you are . However another illness or surgeries Maury cause decompensation again as your body will be busy fighting that , an not have as much energy to fight to stay compensated .

[angelalucianaallen in reply to Bermuda1]

Have you had a fibroscan? What was your score if so xxx

[Bermuda1 in reply to angelalucianaallen]

Nope nor a biopsy . I know that my left lobe is atrophied, dead. I go for bloods every 6 months and a US . I go by how I feel . I was really quite ill when diagnosed , severe as its , muscle wastage , felt cold all the time, could hardly eat, huge weight loss. Took me a good two years to build back up . Three to get back to peak condition . Now have no symptoms, and am presently refurbing a house, yes including tiling , fitting a kitchen . Plastering and carpentry . Take no prescribed meds not have for 3 years , do take some supplements. Good diet , and nurture my liver .

[fluffylottie]

I also have this on my mind, so i asked my consultant last time i saw her if there's anything i need to be aware of that could make me 'take a turn for the worse' and she said any slight insult to the liver. Even though i feel well and it is now compensating, she said I'll most likely need a transplant 'at some point. Any insult, she said, could be alcohol or a liver virus. She got me vaccinated for hep B but my surgery has ran out of hep A (even though the national shortage is vice versa).

So even though i feel well she put her hand out in a motion saying it's teetering so i just need to keep as healthy as possible and avoid any insults to the liver. Hopefully.

Charlotte x

[Brett11]

It’s a wait and see game then.

[kyia]

My partner was in the early stages of re-compensation in late March when a strangulated umbilical hernia caused mayhem with his body and he was decompensated again following emergency surgery. After about a month, he was compensated again. It seems like there are many things that might cause your liver grief, even when you're compensated.

[Brett11 in reply to kyia]

That’s true. I’ve also got the umbilical hernia thing going on but they won’t touch it until it becomes life threatening. Then I assume I will go decompensated again but touch wood, it may never happen.

Cheers,

Brett

[kyia in reply to Brett11]

The consultant had hoped to leave the surgery until "later", but his body had other ideas! People can go on with a hernia for ages with no problems - hope you're one of the lucky ones!

[Brett11]

I’ve never had a fibroscan or biopsy. Am I missing out on something?

[angelalucianaallen in reply to Brett11]

Ask for one. Push if need be. Im always calling or writing. Wont apologise for that as i have a 1 yr old

[KT60]

My husband has been decompensated twice it happened with high dose of diuretics caused kidney injury with high potassium, then second time he got bacterial peritonitis from ablation to two small hcc tumours last yr, he is still decompensated and because of this they wont treat the new tumours that have appeared, both times it happened very quickly just make sure you eat a very very healthy diet Karen